From Lived Experience to the World Stage: How Co-Design is Transforming Endometriosis Surgery Support

We gratefully acknowledge the support of the Future Health Research and Innovation (FHRI) Fund, provided by the Western Australian Government Department of Health, and the Market Access Grant Scheme grant from the Department of Jobs, Tourism, Science and Innovation (now the Department of Energy and Economic Diversification). Their contributions helped us showcase our co-designed endometriosis surgery support program on the global stage at the World Congress on Endometriosis 2025. Their support also helped us bring two women with a lived experience of pelvic pain and endometriosis (Alyssa and Anna) from Perth to Sydney to share their insights, represent Matilda, and present research on the importance of co-design and holistic care before and after surgery.

Why Endometriosis Surgery Support Matters

For many people, laparoscopic surgery is a turning point in their endometriosis journey, but surgery alone isn’t always enough.

Patients often ask:

  • What should I do to prepare for surgery?

  • How do I recover well and avoid setbacks?

  • What happens if I don’t get a diagnosis?

  • Is it normal to still feel pain after surgery?

These questions are exactly why we created the Matilda endometriosis surgery support program, a digital, evidence-based, co-designed solution that supports patients before and after endometriosis surgery.

Why Prehab and Rehab Matter in Endometriosis Surgery

Endometriosis surgery is rarely the end of the story. For many, it’s the beginning of a deeper healing journey. One that includes emotional processing, symptom management, and finding your way back to everyday life. That’s why our program focuses on both prehabilitation (prehab) and rehabilitation (rehab) for endometriosis surgery.

Our digital support program spans 8 weeks (four weeks before and four weeks after surgery) to help people feel prepared, informed, and supported through every phase of care.

“Surgery is helpful, but it's not the end of the journey… even if you do get a diagnosis. Holistic care is really, really important.” — Alyssa, lead co-designer + lived experience advocate

Designed with People, Not Just for Them

The Matilda program has been co-designed with people who know endo intimately - not just clinically, but personally. With the help of our lived experience group, we’ve crafted a care model that’s trauma-aware, practical, and emotionally validating.

Alyssa and Anna have not only shaped the content, they've helped write grants, co-author conference abstracts, review content, and represent the program in national and international settings. Their involvement ensures our program truly meet people where they are.

“One of the most important things we’re doing is talking about the anxiety of not getting a diagnosis, and what happens next. It’s so common, and it needs to be acknowledged.” — Alyssa

“Co-design and involving consumers is something we’re so passionate about… It makes the whole experience more meaningful for everyone involved.” — Dr Kevin Wernli, PhD, Co-founder of Matilda Health

From Congress Conversations to Real-World Care

At the 2025 World Congress on Endometriosis, Matilda presented multiple research posters, including a co-design poster co-authored with Alyssa and Anna, and facilitated a powerful fireside chat in partnership with Gedeon Richter. Clinicians, researchers, and advocates alike engaged deeply with the need for more holistic and accessible post-surgical support.

Since the congress, our program continues to grow. Over 50 patients have signed up or been referred to the surgery support pathway, and more than 25 gynaecologists are now referring their patients directly to Matilda. The result? Less pre-surgery anxiety, better recovery experiences, and more empowered patients.

Supporting Your Patients Through Surgery

If you're a gynaecologist looking to offer your patients high-quality, research-backed support before and after laparoscopic surgery, Matilda is here to help. Our program is fully digital, evidence-informed, and ready to integrate into your existing care model.

“It's not just about the surgery. It’s about giving people the tools, confidence, and support to feel like they can move forward.” — Anna, lived experience co-designer + Matilda Community Lead.

Learn more or refer your patients today - www.matilda.health/for-clinicians

Together, we’re reshaping what endometriosis care can look like with compassion, collaboration, and clinical excellence at the core.

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Endometriosis Surgery Recovery Timeline: Week-by-Week Insights

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The Power of Community: Why We Created the Matilda Circle